• Open Access

A family perspective of the value of a diagnosis for intellectual disability: experiences from a genetic research study

Authors

  • Helen Statham,

  • Maggie Ponder,

  • Martin Richards,

  • Nina Hallowell,

  • Frances Lucy Raymond


Abstract

Accessible summary

This article is about families where more than one of the boys or men in the family have a learning disability. We found that

  •  Families usually want to know the cause of the disability and to be able to give it a name.
  •  Sometimes they want to know whether other people in the family will have babies who will have a learning disability.
  •  Genetic research is a way for families to find these things out.
  •  Families have to balance how they care for people who have a learning disability and what other family members need.

Summary

Many professionals working with individuals with intellectual disability are unconcerned with why someone has the impairment. Genetic aspects may be viewed as, at best irrelevant, but more often, potentially negative. However, where the intellectual disability may be inherited, there are implications for family members and the individual. The data reported here derive from a study of the experiences of families with many boys or men with intellectual disability who were participating in genetic research aimed at finding new causes of intellectual disability. A qualitative design was used, interviewing 120 members of 37 kinships and using framework analysis to explore the data. These family members were positive about participating in the genetic research. They wanted an explanation for what was going on in their family and to enable other family members to have choices about reproduction although the genetic research was unlikely to benefit individuals with intellectual disability.

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